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Germline Gene Editing

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A Call for Moratorium on Germline Gene Editing, Commentary by Genetic Alliance


Throughout 2016, Under the auspices of the National Academy of Sciences and National Academy of Medicine, Sharon Terry engaged in a comprehensive study of the scientific underpinnings of human gene-editing technologies, their potential use in biomedical research and medicine—including human germline editing, and the clinical, ethical, legal, and social implications of their use. The intense deliberations process with a multidisciplinary, international, committee of experts was rewarding; she was impressed with their ability to listen to each other and formulate clear recommendations.

Since that report, in early 2017, Chinese researcher He Jiankui edited a gene known as CCR5 in twin embryos in hopes of making the babies, as well as their offspring, resistant to HIV infection. This action evoked outcry from many scientists and policy makers. It prompted a call for a moratorium on the clinical use of germline gene editing, demanding that we clear a space for important engagement and deliberation among many stakeholders to create an international framework. We are firm that this must first be a global conversation, and—given variation in values and cultural sensibilities—that each country use the international framework to develop its own policies and laws.

For us, the most important aspects are the societal, ethical, and moral considerations. As we say in this piece:

“Irrespective of all of the above, clinical germline editing should not proceed for any application without broad societal consensus on the appropriateness of altering a fundamental aspect of humanity for a particular purpose. Unless a wide range of voices are equitably engaged from the outset, efforts will lack legitimacy and might backfire. The societal impacts of clinical germline editing could be considerable. Individuals with genetic differences or disabilities can experience stigmatization and discrimination.

  • Parents could be put under powerful peer and marketing pressure to enhance their children.
  • Children with edited DNA could be affected psychologically in detrimental ways.
  • Many religious groups and others are likely to find the idea of redesigning the fundamental biology of humans morally troubling.
  • Unequal access to the technology could increase inequality.
  • Genetic enhancement could even divide humans into subspecies.
  • Moreover, the introduction of genetic modifications into future generations could have permanent and possibly harmful effects on the species.”

“Broad societal consensus” is, of course, difficult to achieve. It takes all of us showing up as fully as we can to deeply listen to others. It takes time and resources to have these conversations outside of traditional ivory towers and go instead where people live, work, play, and pray. It means not just listening to the majority, any majority, but the whispering voices too; communities who are underserved and underrepresented. These might be racial and ethnic communities and communities of families living with disability and disease. All of them. This requires meaningful public engagement.

The 2017 report’s chapter on Engagement articulates the primary considerations of a legitimate effort. I will emphasize a few principles that might serve us as we determine how to achieve broad societal consensus.

First, we must recognize that individuals, families, and communities are the experts of their own values, needs, and perspectives. We forget this sometimes and diminish their (our) contributions with paternalistic statements that either falsely protect them or denigrate them. These usually go something like this: “They won’t understand [the topic],” “They can’t possibly make an informed decision,” or “Their perspective is limited by their circumstances or situation.” However, we can apply the same, if not enhanced, limitations to the scientists and other experts involved in gene editing or any other science that poses ethical concerns. The point of finding consensus is understanding that all voices deserve to be heard. Small voices must be amplified, not diminished. Each stakeholder community has only a piece of the truth. As long as we avoid, or shut down, or turn away from diversity of perspectives, we will not build the solid ground we need to responsibly use technology for the good of the very people we are turning down. Let’s open ourselves to a broad conversation, and really listen. Let’s listen first without judgement. Let’s listen without running our own internal dialogue providing counterpoints on the fly.

When we make statement like those above that denigrate the general public’s ability to engage on a topic as complex as germline gene editing, we are actually focusing on the wrong aspect. More important than understanding the science is understanding what my brothers and sisters value. If we can have the dialogue at the level of values, then we start with a common language. We can later translate that into a framework that is specific and erudite with regard to science and policy. We need to sit down, close our mouths, and come to know our communities on the level of what they value, what they love, what they need, what they fear, and what they dream. Then we can speak to one other and have true engagement.

Science and technology tend to stay in their silos, often believing that these should be maintained for a variety of reasons. Because of this, we do not have well tested, honed, and readily available mechanisms for public dialogue. We have not invested in them as a society, at least here in the U.S. Are we really comfortable with low-science literacy in the general public, where there are no ways of garnering personal preferences about scientific and technological advances? The current system is short-sighted and will not garner trust. It is time to address this systemically, so that the next advance is ready for trusted and open public discourse.


The paper "Adopt a moratorium on heritable geneline editing", "Academies’ action plan for germline editing", and "NIH supports call for moratorium on clinical uses of germline gene editingwere published in Nature. March 13, 2019. 

 

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